Tuesday, September 29, 2009

What will it be? Panda Bear or Brown Bear for the boys' birthday cakes? Don't forget to vote!

Just a quick posting. It seems that all of us here are suffering from some form of cold! Mine started in the middle of my much anticipated shopping adventure in the form of a migraine! Ugh! Thank goodness Tracy had Tylenol on hand but by the time we made it home I was in so much pain I had to keep my eyes closed because even the day light hurt. Needless to say I went straight to bed and slept four hours straight until the pain subsided some. I had to get up to complete the church bulletin for the next day and soon thereafter went straight back to bed. Sunday morning found me still feeling awful and the boys sounded miserable themselves, what started out as runny noses last week turned in to coughing and lots of congestion. Poor Dad! He had to take care of us all Sunday. I slept most of the day as did the kids and then first thing Monday morning we took the boys to the pediatrician. Unfortunately the doctor wanted to run every test in the book (due to their prior history) so we had to go through the miserable process of going to the lab. Poor Jonah, why is it always Jonah? He had THREE technicians poke him various times before the final one (the supervisor) was able to draw blood (argh!) Next time I plan on asking first thing for the supervisor, I don't care if I am labeled the hyper-demanding mother, I can't handle my child being poked like a lab rat! Thank goodness Noah's was not as bad but they still had to poke around a bit before they got blood. Both boys have so much scarring that drawing blood is always a nightmare. We had to put Noah back on oxygen during sleeping time so the doctor also wanted a chest x-ray. After all this, we finally found out this morning that both boys have your regular, run of the mill upper respiratory infection. So they are both on Omnicef. Hopefully they will both start feeling better soon. Noah has been extra clingy and only wants Mom so right now our days are pretty interesting! Thank goodness Dad was available yesterday to help take the boys and run to the doctors, etc.

One good thing to look forward to is: Las Vegas! Shane is going for a work convention next weekend and I get to tag along! It will be a nice getaway together. I think we are staying at the Bellagio so I am excited. My cousin's blog mentioned that she took her family to Serendipity 3 over Labor Day so I was MORE then thrilled to find out Serendipity had opened a restaurant at Caesar's Palace. Hurrah! I told Shane we had to at least have dinner there.

And, even better Grandpa and Grandma Langston are coming in to town this Saturday for the boys' birthdays!!! HURRAH! Can you believe the boys turn two a week from today? I cannot believe they are already turning two! Last night I was at Party City picking out cute party hats for the boys and decorations. We are throwing a small party for the boys (just cake and ice cream) and we rented a local park that is close to us. Hopefully I will be able to pull off these cakes I want to make. I found the cutest stand up bear mold and I am practicing today to see how they turn out. I will make cupcakes for the other children coming and the adults get regular ice cream and cake. It will be fun. We canceled Disneyland because we were not able to get the entire family together and we figured it would be best to save until the boys are a bit older. I am, however, thinking of taking Shane for his 35th birthday (just he and I) in December. Grandma Hanna is already in on the surprise for the hubby. She will be down to watch the boys and I am thinking of doing a day at Disneyland and stay in Anaheim. It shouldn't be too bad a deal as they are running their get in free option on your birthday.

So we have a busy, busy week coming up. I hope the boys get better and quickly. We are out of our schedule and I hate being out of schedule! It makes for such long, long days when we aren't running to all our various classes and appointments. Believe it or not, I love keeping busy and I love getting out with the boys. It is good for both of us. So I hate being under house arrest, the cabin fever sets in quickly. Pray that we'll all start feeling better and quickly.

Well, Jonah is down for a nap and Noah won't take his nap without me so I guess I better go get him down (not to mention he is making a mess in the kitchen). Better run!

Friday, September 25, 2009

What a busy week it has been. Now that we have Richardson Center classes plus therapy and play dates our weeks pass quickly. I am so happy it is Friday! Noah has been super cranky today (talk about temper tantrums plus!) and I am glad to see Dad come home in the next few hours. The boys have had runny noses all week and I sound a bit congested today so I wonder if we are coming down with colds all around. Oh the fun!

Tomorrow I am going shopping with Brooke Hanson for her birthday to the Tulare Outlets. Happy Birthday Brooke! Tracy and baby Preston are coming too. I am looking forward to the time out with girls. Our sweet friend Amy Call is coming to watch the boys. I have to publicly brag about what an amazing friend she is. She loves these boys so much and is good with both of them.

Speaking of good friends, as we start this journey with Jonah and his Cerebral Palsy diagnosis I am acutely aware of the many people (unfortunately) who are uncomfortable with or do not recognize Jonah as a person because of his imperfect body. The truth is, my boy is intelligent. Sadly, I was just told of someone who asked my family member the question if Jonah was "smart" and could he actually learn. My first response was to think of the obvious lack of sensitivity on behalf of the individual who asked these questions but I do realize that many people are not exposed to children with special needs. Thank goodness this family member was able to say that indeed, Jonah does learn, he has special needs with his blindness and Cerebral Palsy but he can learn. So today, I want to say that I am proud of Jonah. Every day he smiles, from the moment he wakes up with his happy chatter to the moment we read him a scripture story, say his prayers and tuck him in to bed. He smiles throughout the day, he waits patiently through his brother's temper tantrums and he snuggles with everyone. He is probably the best example of compassion and Christ-like love that I have in my life. So despite his obvious physical disabilities, my child has much to offer this world. I know that my mission will be to gracefully (this is what I hope for) help those around him understand this.

Yes, some days I ask painful questions. Why? Why did both Noah and Jonah suffer so much the first two years of life and why does Jonah continue to have severe struggles? The answer came clearly to me recently that soon after the boys were born, we left their outcome in the hands of God. Both Shane and I specifically prayed to our Heavenly Father and left the lives of our boys in his hands. So the answer that came to me was this was not my choice. Therefore, I move onward with two very loving children who have much to yet teach this often apathetic world that hope lives and that self worth is not defined by physical perfection or materialism. I am proud of both my sons and all that they have overcome, most of which many of us could not do. They are miracles and God is with them every day.

I also want to thank each of you that take the time to be a part of the lives of Noah and Jonah. Thank you for celebrating both boys, even though their needs are so varied. Thank you to those of you who take the time to talk to Jonah, to lovingly touch his hands and let him know that you care for him. Sometimes these moments are all that I have to remember during those difficult days when his challenges seem so insurmountable or an insensitive comment/stare from a stranger hurts my heart. God bless each of you for your prayers and support. We are here as a family today because of your faith. Please continue all you do in loving Noah and Jonah. Show the world what it means to love unconditionally, without limitation.

Friday, September 18, 2009

Farm Day!

It was a lot of fun. The boys and our friends Brooke and her daughter Allie enjoyed a goat, sheep, pigs, bunnies, games, face painting and treats. The boys teachers played with them and took them around to introduce to others. Noah had no fear of any of the animals and kept trying to stick his whole hand in to the bunny cage (thank goodness Mommy was on top of things before his little fingers were nibbled on).

All in all, it was a fun morning. We had fun with Brooke and Allie too!

Classes went well yesterday at the Richardson Center and today we went on a brief walk at the park and then an early lunch with Tracy and her son Preston. I stopped by Michaels to pick up items to make the boys invitations for their cake and ice cream party celebrating their 2nd birthday. I can hardly believe it is almost here!

Tonight we watched Allie while Brooke and Blaine moved in to their beautiful new home. Amy and Tyler brought over their puppy Princeton for a visit and Noah had a blast following him around and screaming at his puppy kisses.

Tomorrow morning Shane gets up early to help the Hansons finish moving and then we'll do the regular Saturday chores before going out on our couple date tomorrow night.

We have only two weeks until Grandpa Langston and Grandma Langston come down for a visit to celebrate the boys' birthday. We are excited to see them again! We also plan to take the boys to Disneyland and I know they both will find things to enjoy.

I better end this posting as I need to try and get some sleep before another day starts.

Tuesday, September 15, 2009

Beach photos!

We had fun on Saturday at Santa Monica. It was actually a bit over cast so the temperature was on the cooler side. Noah wanted to make friends with everyone on the beach. I didn't have my camera but at one point he and this other little girl found each other and were so thrilled to have a new friend. It was so cute. Jonah loved playing in the sand with Dad but was not such a fan of the waves. Noah is in LOVE with sand (you can see in the photos), at one point he was making sand angels and practically burying himself in sand (lots of fun clean up for mom). I wish I would have had my camera! Noah also enjoyed inspecting our faces and when Dad dared to fall asleep Noah made sure his nose and mouth where working like they should be (see the photo below). All in all, everyone enjoyed the beach. We stopped by Claim Jumpers on the way home and beside Noah throwing a fit most of our dinner (got to love the terrible two's) we enjoyed ourselves.

Richardson Center classes are going wonderfully. The boys both love their classes. They have very dynamic teachers and I love having the extra time with them in a school setting. There are OT's and PT's from Terrio in Jonah's class so he gets extra time with them and they have a neat, newer stander that he gets to use while in class. There are varying levels of disabilities in the class, including Downs, Autism, CP and a child that was born with hydrocephalus and also had a shunt placed to help. Noah's class is going to challenge him and give him discipline (which he needs not just at home but in a classroom setting). His class consists mostly of verbal activies to help build vocabulary and speech. He has added his verson of "don't" which includes saying the word with much emphasis and forgetting the "t." This has turned up in his temper tantrums and he always screams it at me when he does not get his way. He also says "uh-oh" non stop. We are working on more and all done. I hope please takes the place of bubbles which is what he calls something he wants. He says "ank u" for thank you (so we are getting there) and understands up and down. Yeah!! The best part of Noah's latest progress is his eating! He now will eat chunks of cheese, hot dog pieces and pieces of fresh peach and banana! I hardly can believe I am even writing his name and these things in the same paragraph! He also tried macaroni and cheese but was not terribly fond of it. Hopefully we can build his food repertoire in the next few weeks. Jonah has also done some great things. One of the Terrio PT's who has not seen Jonah in a few weeks saw him in his Richardson Center class and noted that his trunk strength is getting better and she was excited. Jonah continues to work on his sitting and even weight bearing with his legs. He is GREAT at verbal mimicking games which is awesome for a child that can't even see your lips and relies completely on his hearing. Yesterday we were saying "sssss" back and forth to each other and several vowels and consonants. His main words are still mom and dad but hopefully with more practice and time those vowels and consonants will come together. We met with a speech pathologist Monday in a parent group setting and she talked to us about early speech development. She did say that babbling is half way there and that if our child was babbling regularly to know we were on our way to progress. So I take pride in this.

Tomorrow we are going to a farm day at the Richardson Center. They are going to have farm animals, games and treats for the children. Brooke and Allie will join us for all kinds of fun. I am going to see if I can find them some cute western wear tonight that they can wear tomorrow.

I will take pictures and post them!

Wednesday, September 9, 2009

Oh! One more thing. First day of class tomorrow at the Richardson Center! Jonah will start his "Moves" class which is a national program actually designed and developed in Kern County for disabled individuals. Jonah's teacher, Carmen, called me today and introduced herself, she was very sweet on the phone. Noah will not start his classes yet because we are still trying to manage his oxygen situation. Although he is off, the school needs to keep a small tank on hand just in case and arranging this has turned in to a full blown circus with our insurance. I still can take Noah over and sit with him in Abigail's class but he cannot be left with her until the school nurse has everything in place and a health report put together detailing what should be done should Noah need oxygen. We will probably start with both boys next week.
Guess who LOVES his new switch toy! Jonah. We just made a trip to Madera today for Jonah's surgery follow up (all his well, thank goodness) and we stopped by the Blind Babies office to get a few toys for Jonah. Our contact, Kristi, included a switch toy and switches for us to start using with Jonah and they are a hit! Jonah giggled at this monkey for several minutes. Noah on the other hand was not so sure about the rather real looking creature and was a bit scared to get too close. Guess Mr. Monkey will have to grow on him. The idea behind the switch technology is to help Jonah learn that he can control his environment through the use of various switches. As he grows older and more mature these switches can be used for pretty much everything from operating the microwave to the television, computer, etc. Pretty handy! Kristi also included a couple of new toys for the light box, a bright orange pumpkin puzzle made of big foam pieces and an adorable story in braille about the littlest pumpkin with black background and bright orange pumpkin pictures. Kristi also included a toy bar that we will be able to use in creating a larger "little room" where we can hang toys of all bright colors and textures to create an environment where Jonah can explore. He is getting heavier and bigger so we will soon retire the much used little room that we currently have. We will be able to put Jonah in his stander underneath this new structure and it should also fit over his stroller so we can just wheel him in for play time.

We are so appreciative of everything and send a big hug and thank you to Kristi for staying in touch with us, even when we are out of her service county! She has been a wealth of information and resources for our family.

We did not make it this past Labor Day weekend to the beach because Shane had too many work phone calls. A rather important piece of machinery stopped working so he had to stay in town to manage the repair and get production back up and running. He did take the boys and I out to lunch Monday and then we went on a walk around the mall. It was relaxing and nice. I got our master bedroom cleaned Monday morning, did a work out on my treadmill and then showered before we took off for lunch so we got a lot accomplished. Plus, Shane promised me a trip on Saturday to the beach since we could not make it this past weekend. So I am looking forward to the break!

The boys have been doing well. Noah's vocabulary continues to grow and so does his curiosity. He has learned yucky, uh-oh when he drops something and is working on big boy. He continues to explore with finger foods and tomorrow we are going to try a toddler serving of real macaroni and cheese! Wish us luck! Jonah did great today in PT and was using his left hand well to support himself in the sitting position. Karen (his PT) was very excited to see this. He is all giggles and smiles and is probably the happiest boy that I know. I still cannot keep his glasses on him (dang it) but we are persistent in getting him to wear them (we are almost as quick as he is in pulling them off!)

Enjoy the video, we enjoyed catching him in the moment!
A big thank you to Grandma Hanna!! She helped us out for three weeks and just left this past Saturday. Thank you for all your love and support! See you soon for Christmas!

Thursday, September 3, 2009

I finally uploaded photos from my trip to Washington, D.C. I included photos of the Washington Monument, Capitol, view of Alexandria from the Masonic Temple, the Masonic temple built by George Washington (includes the stain glass window and me standing in front of the Knights of Templar flag), my missionary companion Lillion Clawson-Hoyt and I at Serendipity in New York City, me holding my fabulous knock-off Dolce & Gabanna bag while eating at Serendipity, my dearest friend and cousin, Bonnie and I at Serendipity, Amy (Valerie's friend), Valerie (my sister), me and Bonnie eating at the wonderful Serendipity (best frozen hot chocolate EVER), Bonnie and I in front of Mt. Vernon in Alexandria, the King Street Trolley which runs near Gadsby's Tavern, Bonnie, Amy and I in front of Gadsby's Tavern (famous restaurant where George Washington used to eat during his presidency), the town hall of Alexandra and Bonnie and I in front of the Statue of Liberty.

It was a wonderful trip and I look forward to maybe visiting again next summer to see Valerie and the D.C. area.

Back at home, things are moving along this week. We have been very busy. Monday we took Noah to the Pulmonologist. The specialist was so excited to see Noah off oxygen and after listening to him thought we should try to start weaning him at night too. We also plan to eventually take him off his last diuretic (Diuril) which would put Noah down to a whopping three medications when he used to be taking a minimum of eight (not including his Nebulizer medications). We are making progress!! We have tried Noah off oxygen at night and he does ok for about half the night but then sats in the low 90's so we've put him on 1/8 Liter and that seems to be enough to get him back up where he should be. In a matter of no time we will be off oxygen all together. I can hardly believe I am even typing those words.

Jonah is continuing to meet his goals and little by little getting stronger. I really think these classes twice a week will really help him progress too as they will focus on gross motor development and have every kind of adaptive equipment in the classroom. We start the classes next week. Hurrah! It will also be good for Noah to socialize and start learning some concepts that will prepare him for preschool and eventually kindergarten.

Grandma Hanna has been a huge help the past couple of weeks. We are so glad to have her here. She has been able to witness some huge milestones with Noah. He officially started walking, trying different foods (we have added grapes and diced peaches to his repertoire this week...he still is not big in to cheese or meat of any kind but we are going to try hot dogs with cheese in the middle and see if he will try them).

It is hard for me to believe it is September! Soon it will be October and Grandpa Langston will be back for a visit. We look forward to seeing him soon.

I hope to convince Shane to go to the beach this weekend for Labor Day but I do believe it will depend on whether or not he is able to actually get away from the office Monday.

Stay tuned for more adventures.